A Narrative by Julie A. Dickison, PsyD
It was cold or it was hot, sometimes rainy, and always quiet outside the glass.
Except when the big lawnmowers were running in the summer. Back and forth, back and forth in ever tightening circles. On some days a breeze waved through the trees in the distance. Cold breeze, hot breeze, wet breeze as seasons passed. I would turn to look out on the lawn by my mother’s room at the nursing facility. The parking lane ran beside the building—a fire lane. No fire like the present, I thought. Not as tough as the fire they faced inside. And I stood helpless outside the Glass, except for my presence and the family bond—the fire within.
In the winter I shuffled my feet back and forth to keep warm, always remembering to wear pockets to hold gloves, maybe an umbrella, a mask, a cell phone. I needed the cell phone to call ahead, when I was about 10 minutes away, and then use it during the window visit through the Glass. Mom could not hear me through the Glass after a few months, could not see me against the back-light of day against the Glass. Pollen and dust would collect as well. The lawn mower was not my friend. However, it did mow down some of the clover and divert the bees to other locations. And although the phone created a speech delay that could be confusing, it did amplify my voice. After a while mom found it harder to connect me to the person on the phone outside the glass, and then even on the iPad/Facetime screen presented to her, but my voice was amplified and that counted. That mask that I carried was needed to do the drop off at the facility front door – critical.
During 2020, I needed to be sure and use the bathroom just before I left home. It could be 2 ½-3 hours before I would get another chance. There would be nowhere to use the bathroom on the route; now a long highway filled with darkened signs and locked-down businesses, on a (now deserted) 23 miles. There and back. There and back. No entry to use the bathroom at the facility – just hold back on the coffee, drink more water on the return trip, and maybe the pharmacy next door might reopen soon.
As I waited outside for staff to wheel my mother back to her room, I could turn from the wind and catch just a bit of the winter sun as it hung to the building’s corner at 3:00. I would stand in that sun, letting it warm my jacket. When the light would come on in my mother’s room it would outshine the sun. A different kind of warmth—the kind that comes from inside. Her facility went into lock down February of 2020 and, until April of 2021, was in lock-down. After that time it has been patchy—open and closed, open and closed. When I try to identify a feeling living as a family member and health care worker during COVID, it is difficult. I don’t know if there are many words that can describe this human experience. Quiet desperation, endurance, patience, trauma, fear, frustration, and staff heroism are what came to me – perhaps I can write about those.
I don’t recall the date when I first read the LinkedIn post. A winter’s evening. I believe it was late December, 2019. An official of the CDC posted a notice (accompanied by a map) flagging just barely a handful of cases of an unidentified upper respiratory illness linked to an open animal market in Wuhan, China. I took note of that post, sharing it with the word ‘important’ to my network. I remembered. I worked in a primary care setting in the late 1990’s, and I recalled when the urgent CDC messages tracing H5N1 (Avian flu) in Southeast Asia surfaced, with pica type that shouted in simple paragraph: “Family members contracting the sickness after children tended poultry.” In 1988 I took an epidemiology class and we studied the projections of a new disease, AIDS. It became pandemic. We debated what to do about the last of the smallpox virus – old pandemic. The scariest to me was Ebola—potential pandemic – super deadly and fast spread. What could be more scary?
Decades later and an Internet away, I felt it was really lame not to keep current, so I took a short course from Harvard EdX: “Lessons from Ebola: Preventing the Next Pandemic.” I enjoyed the course videos as the summer nights would fade to darkness, and my husband would prompt me to come inside, that I was hurting my eyes staring at the computer at dusk. It was August, 2018. How naïve the world was. How flexible. In a way, we’ve been forged by the crucible of COVID. So, did we as a people gain character, or did we lose it? Things aren’t as flexible for us now, but we are certainly wiser. We have new skills. We understand supply chains and shortages and social distances, mRNA, and Instacart.
I was working at a health facility at the onset of the pandemic. 2020 was tough, uncertain window for healthcare workers. How much harder could it get? You just don’t let your mind go there. In our hometown, the commute to the facility faces directly into the winter sun, the kind of commute you Windex windshields for. Often you have to raise a hand to block the sun to see traffic lights. In the rear- view mirror, I could see just a few other cars, spaced out block by block. Around my neck was a homemade mask of beautiful, colorful cotton fabric made by facility volunteers. No N95 masks—those were for hotter kitchens of care than ours. No procedure mask hung to my neck—those masks we placed in separate lunch-sized paper bags, each marked with a different day of the week. Here is Monday’s mask. Here is Tuesday’s. They had to last multiple weeks. There was hardly any PPE. Anywhere. I got a shield and wore it until if fell apart. It was all pretty desperate. We weren’t sure the PPE coverage would even be enough against this virus, but it was all we had. It’s hard to breathe in PPE, but you don’t let your mind go there. Hard to drink enough water, too. Winter air in a building is very dry indeed, when you can’t get a chance to guzzle some water. And so we drove that stretch of road into the winter sun, straight-faced. There had to be many of us that accepted that this could potentially be our end, but it changed nothing—our purpose was to protect and help those residents or patients we cared for. If COVID took hold in our facility it would spread like fire on oil…the wolf at the door pacing with every passing week. The staff held that door closed for 8 months, with paper bags and plastic shields, dehydrated lips, and cracked hands. After 8 months I had to exit. My back went out, my mom became ill, and family counts. COVID forged us, creating a place and time to experience heroism, endurance and tragedy that now stands embedded among us and within us. None of us wanted to go on this journey, but now that we are here, what have we learned that has made us better and stronger? I can simply offer some of my COVID story—with my mother Through the Glass.
Mom was 89, with severe dementia and a urinary tract infection when she contracted COVID in June/July of 2020. Outgoing and engaged, my mother had overcome many odds since facility admission. Several of the staff gave her wonderful nicknames, and mom would hold out her hands and say “I love you” as they would talk with her. Mom would wheelchair pedal down the halls, stating this was “the school,” which made sense. Mom had worked as an administrative assistant to deans and chairs of departments at a university. She coordinated the residents and fellows in their rotations, and would now patiently be in back of the facility staff as they did report, or shift change, or enter data on the hallway computer screen. The scrubs everyone was wearing was the big cue—this was “the school,” and her job was to shadow them and help them. So facility staff gave her blank folders to fill out with a list of random names, which she neatly completed on evenings she could not sleep. Though aphasic, mom could still communicate what she needed by her tone of voice, and amazingly, she could read. Mom’s reading was a preserved skill, as was understanding humor and even irony in what she read. So I dropped off larger print books and magazines and we had spent many times reading together. Things had to adapt under COVID—she had to read to me Through the Glass.
Other patients on the memory unit had contracted COVID, though I don’t know the exact number. They can’t disclose that. The caring and talented staff scrambled to care for them. I can’t remember when I heard of first cases at the facility, but I do remember walking away from my mother on our last visit in February before the lock-down. It is burned into my memory, wishing I could have touched her shoulder goodbye or given her one more hug. I had dropped her off at the TV room and saw her from the side and away as I walked toward the unit door. After she caught COVID, I remember FaceTiming from my office at work, and with visits through the Glass when I could leave work. She was very sick. During one Facetime call, she was so sick I thought she might die right then and there. On the call, all I could do is recite the Lord’s Prayer. I could hear the staff crying. How hard for her, for them, for me—but what could we do differently? That evening I looked up the verses and hymns for her funeral service. It would have to be outside with limited (if any) attendance—just another silent desperation under COVID.
In July 2020 I stepped down from my facility position and turned my energy toward family. Mom did survive. She survived, more likely from her strength rather than any I brought from outside the Glass. She was so weak she seemed to be literally upheld by the cheer and staff endurance until she could hold herself. Recovering from COVID, it became clear mom had forgotten how to eat and drink, though. I was not even sure she could smell or taste food anymore. We didn’t know anyone could recover a sense of taste or smell after COVID. I thought as I stood outside the Glass, “Don’t just stand there—do something.” And so I did, but not without help.
I had worked in Bariatric Surgery Psychology for some years, and tried to use the knowledge. COVID patients often suffer that loss of taste and smell—combine that with trouble swallowing in dementia and having to provide prompts standing behind the Glass made poor odds for mom’s survival. So I decided to make nutritional shakes with fresh fruit and adjustable protein, that had texture that could possibly “cut through” the lack of taste and smell, adding to them the fizz of a diet soda. She might not taste it yet, but she could feel it. It was always presented in a red solo cup to help reinforce the experience. I would provide cheerful prompts to drink from the cup. The smoothies worked, through the hands of caring and talented staff members handing it to her on the other side of the Glass. I would drop off the shake (smoothie) at the front of the building, and it would be walked back to the unit staff. Masked, shielded, yellow-gowned, and gloved, they cheerfully prompted and patiently worked (despite huge other demands), providing encouragement and pointing toward the telephone as I spoke. They provided their own prompts as well. It takes a village.
So the heroism of those workers is a story in and of itself. One of the staff helping hold those red cups lost a parent to COVID early in the pandemic, enduring great hardship. Another staff member holding that cup lost a parent indirectly from COVID, as they lost to cancer and were isolated from their family during treatment. Yet these two healthcare staff worked hard to help my own mother recover from COVID, with professional and cheerful conduct. Is this grace? Is this mercy? I think they would say it is what they are supposed to do—what they are meant to do. From July 2020 to April 2021 they and other caring staff handed my mother the nutrition. These are the stories of heroism among health care workers. Not just the sheer hours. Not just enduring PPE and fatigue and wave after wave of cases, but the stories of loss as great or greater than our own. They did not waver. They did not complain or vent. How much loss have health care workers endured? There may not be any real way to measure it. This body of work stands. Maybe heroism can’t really be measured.
We were doing the smoothies a few times per week and they were working. She was eating again but fell behind on the fluids. She was never a good water-drinker. Perhaps no fluid had any appeal to her any longer. Except the smoothies, but that would never cover enough bases. In November of 2020 Mom lost 10 pounds in a month. She was dehydrated with multiple test results of high sodium. The outlook was grim. So I committed to delivering those smoothies every day, behind the Glass. The facility administrator mercifully and wisely assigned a good staff member to help each day at 3:00, and that they did. Each day I would wait for mom to be wheeled back at 3:00. It was a cold December in 2020 three weeks later, but warmed as one of the staff was asked to relay to me that mom’s blood values had returned to normal.
Visitation was frustrating during COVID. Hard for staff, hard for family, hard for the residents. The fall weather became much too cool for outdoor visitation. We met behind a large plexiglass window in an outdoor building for awhile in the winter, but that did not go over big with mom. She was bundled up, but it was just too cold outside to be wheeled over. If I was confused and cold, I wouldn’t want to go out either. Mom was cold during these visits, so I often opted to go behind her bedroom window glass instead and hope for eventual vaccination. Families were allowed 20-minute windows for visitation—we signed up via the website. Staff had to hustle from one unit having a 20-minute visit to the next 20- minute visit on a different unit. For the outdoor visits it was luck of the draw regarding weather—too hot, too cold, or rain and a visit could get cancelled – a visit through the Glass and then only the family member would face the elements – the elements and no bathroom. In any case, a strictly scheduled visit is a challenge with 35-45 minutes each way. I carefully scanned the highway for any accidents or slowdowns that might cause delays. Cell phone call at 2:50. Show at 3:00. Up the road and down the road, in ever tightening circles.
I visited and visited. We all watched the news. We endured. We watched for availability of the Pfizer and Moderna shots to the weary skilled nursing facilities. I was so relieved that the shots were becoming available, but yet so worried I would still never hold mom’s hand again. It would take more than just the shots to allow me to enter the facility. The county COVID rate was high, and staff or visitors could still bring COVID into the facility. I would need shots as well. Easier said than done. It was no small achievement in the early days of vaccination, as a literal scramble for vaccination slots took place. Being temporarily outside the health care system, I was classified as a health care worker but I was not working at a facility, so I experienced the tide and desperation of those millions who scrambled for a vaccine dose. It could easily take 10-15 hours of phone calling to score a vaccination appointment, only to have the appointments wiped out as our county’s allocation of vaccines was reassigned to other higher priority areas. We had at one point one primary vaccination appointment number. It opened calls at 8:00 in the morning on Monday, and literally by 8:20 all slots were taken for the week. Calls would be taken at 8:00 the following Monday. All people were worthy of the vaccine. All those calling were fearful. All were trying to do the right thing. Some did not make it. Just another desperation during COVID in 2021.
Patience became a skill during COVID. Many of us learned to be more patient. Patience waiting on the phone. Patience learning Zoom and remote working and remote learning. Remote. Remote. Patience waiting for food or goods that were in short supply. Many of us had never really remembered shortages. I remember the gasoline shortage in the mid-1970s and the long lines at the gas pumps. But multiple generations have been born since that day, and outside of a natural disaster like a hurricane, times of shortage are rare in the US. Well, now we have endured shortage. During COVID, I remember Smurfing. Smurfing was the term my husband and I used for searching for goods in short supply. A little here, another there. You take the far-left isle and I’ll take the right isle. Toilet paper was big. Toilet paper and Lysol. Any kind of Lysol. God bless Lysol. You could clean food prep surfaces with Lysol. It wouldn’t stain your clothes, either. Lysol killed COVID. The internet was full of fake offers of Lysol. Got reeled in to those a couple of times before I avoided them – if it’s listed as Lysol, it’s too good to be true. I remember the miracle of Instacart and the idea that the groceries could be delivered quickly and cautiously by cheerful drivers. Glad to tip them. Maybe another set of heroes for the pandemic—driving back and forth in ever tightening circles.
The miracle of the mRNA vaccines still amazes me. What is it that humanity ever did to deserve these unfolding events; to have the technology and the research and the supply pipeline and the cold chain technology to basically save us before the human race succumbed to COVID? Think about it. How many things could have gone wrong and led to our complete demise? But as miraculous as the vaccinations were, it was too late for many living in close quarters. Here in the U.S. those in skilled nursing were the first hit and the hardest hit. Vaccinations were coordinated and distributed and I pursued my own as fast as I could. But it always felt like the clock was ticking – that any week a variant could surface that could burn through our population like a hot knife through butter. What can you do, but forge ahead? You do what you can. Up the road and down the road.
By March 2021, mom’s shots and my shots were complete, and I anxiously awaited the go-ahead for the reopening of the facility. I was optimistic and upbeat. I backed down my visits to every other day and dropped off an additional smoothie for the staff to give on alternate days. They later requested another extra smoothie be added to increase the intake. It was a pleasure. By March, I had literally worn down the grass standing outside the window and Through the Glass. On the last window visit before the April reopening of the facility I waited for the light to come on. Looking down and each a few feet apart, I found three separate four leaf clovers and threaded them through the chain of the necklace I was wearing. “For the Trinity” I thought. It was a great visit and the tightening circle opened. My first person-to-person visit in my mother’s room, I played a music CD for her, and one tune I remember was Yanni’s “To The One Who Knows.” I brought flowers for a vase in her room and we refilled the vase as was our old tradition before COVID. No hand holding. No touching. But it was in Front of the Glass.
Mom celebrated her 90th birthday in August. A big birthday cake, a vase of flowers, and I smiled behind my mask. As she holds and kisses on her doll today, I am reminded about the fires within, the bond of family, the work of heroes, and perhaps a testament to all of us. In October, 2021 I have given soft-handoff of the nutritional shakes to the good dietary staff, who now mix them for mom to go with each meal. I bring her extra ones twice a week, adding her favorite fruits. And, as for me, I pursued some great Physical Therapy and have gladly returned to work, serving that facility and residents I missed so much. Up the road and down the road.
We who have lived during COVID have lived and grown a lifetime in two years. What I gained is a new kind of patience and stamina that I did not know I was capable of. To what length would you go to help one that you love? To save another? Upon reflection, I decided that the ever-tightening circles I traveled really were not a trap or a gauntlet, but maybe they represent the journey of circles you make in a labyrinth—an ancient symbol of faith, journey and wholeness. To our own center and back out again. The primary walk was my mother’s, and I walked it with her. She walked the labyrinth of COVID. Perhaps we all have. COVID may have given us a chance to see something we might otherwise not have seen. Through hardship and survival we develop character. It may become the defining story of our generation and of our era. We have always thought that those of World War II’s Greatest Generation in were heroic. Perhaps we are now heroes as well.